how to get the most out of your cf center mary helmers, r.n., b.s.n. pediatric cf nurse coordinator...
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How to get the most out of your CF Center
Mary Helmers, R.N., B.S.N.Pediatric CF Nurse Coordinator CF Care Center Lucile Packard Children’s Hospital
Who Does What
Check in– Front desk staff– Insurance information/HIPAA
Vital signs– Including height, weight, review meds
Care team
Your Team
Nurse coordinator Dietician Respiratory coordinator Social worker Patient service coordinator Research staff Your doctor
Mary Helmers
Nurse coordinator– Ties your child’s care together– Education– Prescriptions– Running CF clinic– Phone advice
NO live person Calls returned within 24 hours
– Transition coordination – Monitor all test results
Labs, cultures, spirometry, x-rays….– Parent advisory board memberContact Information: [email protected]: 650 736-1359
Julie Matel
Dietician– Growth curve – Nutritional status– Diabetes education– Recommendation on enzyme dosing– Supplements– Tube feedingsContact Information: [email protected]: 650 736-0248
Kristin Shelton
Respiratory coordinator– Therapy review – Spirometry– Sputum induction, sputum collection– Teaching new modalities– Equipment acquisition
Contact Information: [email protected]
Phone: 650 724-0206
Lindsey Martins
Social worker– Assess social situations– Coordinate assistance:
Financial Counseling Disability information State assistance program Mentoring
Contact Information: [email protected]
Phone: 650 736-1905
Zoë Davies, Colleen Dunn, Cathy Hernandez, Angie Leung, Cassie Everson
Research staff– Meet all newly diagnosed– Consent for the CFF registry– Identify eligibility for new studies– Coordinate lab samples– Continuity between both adult and pedi programs– Plan education daysContact Information: [email protected]: 650 736-0388
Miguel Huerta
Patient Services Coordinator– Initial contact for all new patients– Schedules all new patients– Authorization for testing, visits, prescriptions
Contact him with insurance changes, ASAP
– Mails out sputum and lab results– Assists the nurse coordinator
Contact Information: [email protected]
Phone: 650 498-2655
FAX: 650 724-6400
Your CF Doctor
The CF expert– Additionally you may see…
Medical student Resident Fellow
– Contacting your doctor:
Please call Mary at 650 736-1359
Goal of Care Coordination
Proactive prevention of CF symptoms through...
Your Child’s Care
– Quarterly clinic visits– Sick visits– In-depth yearly visit
Done on birth date
– TransitionBooklets handed out at age 8
Quarterly Visits
Proactive PreventionWatching for early CF related
symptomsMedications & refillsFlu & other vaccines as neededEducation as needed
Sick calls – What we need to know
In-Depth Yearly Clinic Visit:
Review medications & refills Annual Labs Chest X ray CF-related diabetes (OGTT)
Age 6 Bone disease (DEXA scan)
Age 16 PFT’s
Age 6 Education review
Additional Needs, PRN
Phone Advice Follow-up Medications refills Home care management Labs & tests results Hospital & clinic communication Collaborates with adult coordinators
Transition
Ongoing process Booklets Individual plan
– 18-21years
Hospital transition– Team role
Quarterly transition meetings
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